From Stories to Decisions: Turning lived experience into meaningful action

Overview

Patient and public engagement is more than creating opportunities for people to share their stories. Meaningful engagement requires us to listen to the knowledge within lived and living experience—and to use that knowledge to inform research, services, policies and decisions. Yet moving from stories to decisions isn’t always straightforward: how do we ask questions that generate insights people can act on, bring together different and sometimes conflicting perspectives without losing their complexity, identify patterns while respecting individual experiences, and demonstrate what changed as a result of people’s contributions?

In this practical session, we’ll explore the often-overlooked work between hearing people’s experiences and using experiential knowledge to inform decisions. Through examples from health research and health systems, participants will consider approaches to eliciting, synthesizing and making sense of experiential knowledge, bringing it alongside other forms of evidence, and closing the loop with patient and public partners.

Learning Objectives

• • Distinguish between collecting stories and engaging with lived and living experience as a form of knowledge that can inform research and health-system decisions.
• • Develop questions that move beyond general feedback to elicit experiential knowledge relevant to a specific decision, challenge or opportunity.
• • Apply practical approaches for synthesizing multiple perspectives while preserving differences, tensions and experiences that may not represent the majority.
• • Consider how experiential knowledge can be brought alongside research evidence, clinical expertise, operational knowledge and other forms of evidence in decision-making.
• • Identify strategies for closing the loop by communicating how patient and public contributions influenced — or did not influence — a decision, and why.